In This Issue. A Teen s Tragedy Drives Hope and a Regional Support Program...Page 2. Kidney Foundation Upcoming Events...Page 4

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1 Fall 2017 The Nephron Remember, if there is anything you would like to see or learn more about, contact Connie: or x and she will do her very best to get it added to the newsletter! In This Issue A Teen s Tragedy Drives Hope and a Regional Support Program...Page 2 Kidney Foundation Upcoming Events...Page 4 Why do I Feel so Tired?...Page 6 Tap into Your Potential-Be a Transplant Ambassador!.....Page 8 Recipes! A Sweet Treat and A Fall Warm-up!...Pages 10 to 12

2 Page 2 Newsletter Title A Teen s Tragedy Drives Hope and a Regional Support Program David MacKinnon had a passion and a gift for art, architecture and airplanes. He dreamed of one day becoming a pilot. But from birth David s health was put to the test, challenges that continued into his teen years that he worked hard at to overcome. It was a rare and massive gastrointestinal bleed that eventually led to a diagnosis of kidney disease for 16 year old David. He would need a kidney transplant. Finding a match for a living donor transplant wasn t an obstacle. David s mother Michelle met the criteria. David began 10 months of Peritoneal Dialysis and in the 11 th month was switched to Hemodialysis while he waited for his transplant date. Hemodialysis normally works well for many with chronic kidney disease, but unfortunately David s body did not take it well, and as a result he suffered from many strokes that mimicked dialysis disequilibrium syndrome. Eventually a transplant date was set for June 8, Michelle was fully prepared to donate her kidney to her son, but tragically David died that same day before the transplant could take place. Michelle vowed to donate that kidney anyway and she was given the opportunity to save a two year old boy in 2015 with that very kidney. Michelle says she feels tremendous gratitude to have been able to do this for another family on behalf of David. Immediately, the MacKinnon family transformed these unfortunate circumstances into motivation, helping others who are considering a kidney transplant or donating a kidney by providing resources and education so people feel comfortable and supported in the process. She has also found hope in a program led by the Ontario Renal Network and Canadian Kidney Disease Network; the Transplant Ambassador Program. St. Joseph s Healthcare Hamilton s transplant team has partnered with the Canadian Kidney Disease Network/Ontario Renal Network to implement a new face-to-face support program organized by kidney recipients and donors called the Transplant Ambassador Program. Michelle MacKinnon is the lead at St. Joe s and is currently recruiting individuals with lived experience to be a Transplant Ambassador. The goal of the program is to connect individuals who are considering a kidney transplant with the Transplant Ambassadors, and to support the potential recipient/donor every step of the way to show hope for a positive and healthy future.

3 Page 3 Volume 1, Issue 1 St. Joe s undertakes more than 100 kidney transplants each year to transform lives for those suffering from kidney failure. Most of the patients who have a living donation transplant are fully functioning without dialysis for the rest of their lives. If you are a successful kidney recipient or donor interested in becoming a Transplant Ambassador at St. Joseph s Healthcare Hamilton, please contact Michelle MacKinnon by at michelle.mackinnon@transplantambassadors.ca. For more information on kidney transplants and donation, visit the St. Joe s website.

4 Page 4 The Nephron

5 Page 5 The Nephron Local Kidney Walks Welland: September 23rd - Merritt Island Park, Welland, Ontario, L3B 3E9 Hamilton: September 24th Confederation Park, Willow Cove Pavillion, 585 Van Wagners Beach Rd, Hamilton, ON L8E 3L8 St. Catharines: September 30th Lester B. Pearson Park, 352 Niagara St, St. Catharines, ON L2M 4W1

6 Page 6 The Nephron Why do I Feel so Tired?? Fatigue is when individuals feel tired and exhausted all of the time which is a debilitating side effect frequently experienced by many who suffer with Chronic Kidney Disease, especially those on Dialysis. In fact, fatigue has such a negative effect on Chronic Kidney Disease patients' lives that a study published in the American Journal of Kidney Disease found that reducing fatigue to help improve a patient's quality of life was considered more important than survival by some patients. Both Hemodialysis and Peritoneal Dialysis cause fatigue, and ranges from 30% to 80% depending on the Dialysis Modality (Treatment Type). This side effect is thought to be caused by a combination of the loss of normal Kidney Function, effects that Dialysis can have on the body, dietary restrictions associated with Dialysis, and overall stress and anxiety that many people with Kidney Failure experience. Since dialysis cannot fully replace the all kidney s functions and because dialysis can be hard on the body, there can be side effects and complications after dialysis including fatigue, low blood pressure, nausea, vomiting, dizziness, muscle cramps, skin itching, etc. The main reasons of fatigue after dialysis are loss of kidney function and malnutrition due to loss of appetite and dietary restrictions. Besides, many dialysis patients suffer from extreme stress, anxiety and worry which might be another reason for fatigue. Although medications like EPO can sometimes help with fatigue, there are additional steps which patients may immediately take to improve their overall health outcomes and limit feelings of excessive fatigue including, talking to your Dietitians to see if your diet can be adjusted to help increase energy levels. Research has also shown that a regular low-to-moderate aerobic exercise plan which is developed with your Healthcare Teams can improve fatigue. For instance, walking, jogging, swimming, cycling, Tai chi, and Qigong (an ancient Chinese health care system that integrates physical postures, breathing techniques and focused intention) are all good choices for most Chronic Kidney Disease patients. Make sure to check with your Nephrologist or Healthcare Team before starting any kind of physical wellness program. If you find that you are fatigued after starting a fitness program and regular exercise is excessively difficult, then talk to your Nephrologist or Healthcare Team who will be able to advise you about the type of exercise which is more suitable for your needs.

7 Page 7 You should know that many people who are on Dialysis specifically have noted that they feel "out of breath" when beginning a new exercise regimen. However, they found that by persevering, the exercise became easier with time. References: Jhamb, Manisha, Steven D. Weisbord, Jennifer L. Steel, and Mark Unruh. "Fatigue in Patients Receiving Maintenance Dialysis: A Review of Definitions, Measures, and Contributing Factors." American Journal of Kidney Diseases : The Official Journal of the National Kidney Foundation. U.S. National Library of Medicine. "Dialysis - Side Effects."Dialysishttp:// National Health Services. "Hemodialysis Fatigue: Just." Frontiers. "What Is Chronic Kidney Failure? What Causes Chronic Kidney Disease?" Medical News Today.

8 Page 8 Seeking Kidney Transplant Ambassadors! The Kidney Transplant Ambassador Program (TAP) Anew face-to-face support program organized by kidney patients and kidney donors to help others learn more about the kidney donation and transplant experience. You Would Be An Amazing Transplant Ambassador if you: Have a successful kidney transplant experience as a donor or recipient Are willing to share your story with other patients and potential donors Are willing to visit kidney clinic(s) in your area1-2 times per month (day or evening) Are willing to learn and share information about the transplant evaluation process in your area Are willing to learn and share updated transplant education materials and resources Have a passion to help others understand more about kidney donation and transplantation

9 Page 9 The Nephron Interested In becoming a Transplant Ambassador? Visit Michelle MacKinnon, michelle.mackinnon@transplantambassadors.ca Or call us toll free

10 Apple Cauliflower Soup with Chicken INGREDIENTS 4 apples, peeled and quartered 4 cups of cauliflower, chopped 2 cups Spanish onion, diced 1/4 cup sunflower oil 1/4 cup cider vinegar 2 teaspoons ground cumin ( or less ) 1/4 teaspoon crushed chilies (hot ) and /or freshly ground black pepper 3 cups of water (approx. ) 1/4 cup olive oil 2 large chicken breasts, cut into strips ( Or 4 cups chopped cooked chicken ) 1 1/2 cup onion, sliced thin 1 apple, cored and sliced 1 teaspoon freshly ground black pepper 8 tablespoons sour cream ( 1 per serving ) Fresh juice of 1 lime (1/2 teaspoon per serving ) 2/3 cup of chopped cilantro ( or parsley ) PREPARATION SOUP Prepare apples and vegetables. In a four quart stock pot or heavy soup pot, over medium heat, cook the apples, onions and cauliflower in the sunflower oil, cover and stir regularly, until soft but not brown ( 15 minutes ). Remove lid and add vinegar and spices, cook for another 5 minutes. Add the water ( it should just cover the vegetables ). Bring to a boil, reduce heat slightly, simmer for 20 minutes then remove from heat. Blend until creamy when slightly cooled. CHICKEN AND TOPPING While soup is simmering, in a large pan, heat the olive oil until very hot and sauté chicken with onions 5 minutes. Add apple slices and season with pepper, cook for an additional 5 minutes. Remove from heat and keep warm or refrigerate immediately if using later.

11 Page 8 IF USING COOKED CHICKEN: sauté apples and onions together, season with pepper and add chicken at the end of cooking time to warm through. Serve each bowl of soup topped with some meat mixture. Garnish with sour cream, lime juice and cilantro. The soup may also be enjoyed without the meat topping hot or cold. Simply top with sour cream, lime juice and cilantro or parsley. SUGGESTION: Soup as a meal, prepare in advance, or freeze In portions for use later

12 Diabetic Snickerdoodle Cookies Portions: 24 Serving size: 2 cookies Ingredients 2-3/4 cups all-purpose white flour 1-3/4 cups sugar (divided use) 1 cup butter, softened 2 eggs 2 teaspoons cream of tartar 1 teaspoon baking soda 1 teaspoon vanilla 1-1/2 teaspoon ground cinnamon Preparation 1. Heat oven to 400 F. 2. Combine all cookie ingredients in large bowl and mix well. 3. Stir together remaining 1/4 cup sugar (or Splenda ) and cinnamon in a small bowl. 4. Form 1 balls and roll in the sugar mixture. 5. Place dough balls 2 apart on an ungreased cookie sheet. 6. Bake for 8 to 10 minutes until browned. 7. Cool and enjoy! Renal and renal diabetic food choices Carbohydrate Choices 1 starch 1 1/2 1/2 high calorie 1-1/2 fat Helpful hints Recipe analyzed with regular sugar. Use 3/4 cup Splenda Sugar Blend instead of 1-1/2 cups sugar in step #2 to decrease calories to 160 and carbohydrate to 18 grams for 2 cookies. If you have ideas or suggestions for what you would like to see in this newsletter or if you would like to receive this newsletter by please contact Connie Spears at x35170 or cspears@stjoes.ca